Sarah

Some reflections on #longcovid 🧠 cognitive dysfunction and it’s impact on social life. I’ve been writing these slowly over the last 3 months. I hope it’s insightful- especially to those who do not have long covid and want to understand “brain fog”. 🧵/18

I'd advise you against using this on your re-election leaflets.

Anyone have any tips for getting insurance for my new powerchair? What small print should I be watching out for? Feeling a bit overwhelmed by it all. Recs are welcome. (I’m UK based) #NEISvoid

My partner has asked me to share this poem he wrote for a fellow Very Severe ME-sufferer. It's designed to be read just 2 words at a time, whenever able. I think you could change the name to yours if you wanted it to be your poem too! 💙

I’ve spent 3 years photographing people with #MECFS, a condition I’ve lived with since 1987. 50 people. Invisible & incurable illness. The work shows at Oxo Tower in September. Updates & book info here: tinyurl.com/58khuv8z #InvisibleIllness #PhotographyForChange

The Final Delivery Plan for ME/CFS has been released today. The full report was shared with some organisations and media outlets late yesterday. We’re waiting for it to go online. A short 🧵with some thoughts… (1/)

So sorry to hear of the death of @Bridget_OShea who had severe #ME This is a piece of hers on Substack, I’m sure a lot of us can relate to it. Another #ME death 💔 open.substack.com/pub/bridgetosh…

RIP Bridget 🕯️💙 Sending lots of love to everyone who knew her and the wider MEcfs community. dignitymemorial.com/obituaries/chi…

I’ve just learned that Bridget has passed and I’m heartbroken to see another among us lose their life to this illness. Rest in peace Bridget. 💔 These illnesses are deadly. We need to stop pretending they are not. And when someone says this 👇, we need to believe them.

I wouldn't have thought this could become more nightmarish. Thinking of Karen Gordon and her family.

Please write to your MP and ask them to sign this amendment 🙏

Your regular reminder: no major mental illness—schizophrenia, bipolar, schizoaffective, cPTSD, personality disorder, severe anxiety—is constant, disqualifying us from the new ‘severe condition’ criteria. Please, please write to your MP askign them to vote 'no'. #TakingThePIP

Would be great to get some more signatures on here Petition: Postural Tachycardia Syndrome: fund training and facilities petition.parliament.uk/petitions/7068…

It's definitely a big feature of being a new arrival on the ME scene. Disbelief, horror, disappointment, repulsion - and you're half embarrassed to express it because of how naive or insensitive it might seem to the veterans.

Chronic NHS staff shortages now made worse, and @UKLabour are wondering why the number of ill & disabled people, unable to work, is rising dramatically. Hint: it’s not benefit fraud! #StopTheCuts #TakingThePIP

I think I have PMDD. Would love any advice from any #pwME who have that

So many of us are in this same position, now trying the manage the stress over having our financial lifelines cut. Labour MPs need to rebel against this. #TakingThePIP #StopTheCuts #PIP #DisabilityJustice

Please help out a beautiful soul and dear friend of mine. The world needs Rhi. 🙏

Today’s Hall of Fame is special! Last night, Labour MP and whip @vickyfoxcroft resigned from the government over the disability benefit cuts. She said: “I knew life was difficult for disabled people, but via my engagement with disabled people and their organisations I would…